It's never too early to discuss your final wishes

Sep. 22, 2013

Written by

Dr. Manoj Jain and Dr. Bill Frist

Dr. Manoj Jain

Dr. Bill Frist

Five wishes: important end-of-life decisions

• The person I want to make care decisions for me when I can’t. Assignment of a health care agent (also called proxy, surrogate, representative or health care power of attorney). This person makes medical decisions on your behalf if you are unable to speak for yourself. • The kind of medical treatment I want or don’t want. A living will — a definition of what life support treatment means to you, and when you would and would not want it. • How comfortable I want to be. Addresses matters of comfort care — what type of pain management you would like, personal grooming and bathing instructions, and whether you would like to know about options for hospice care, among others. • How I want people to treat me. Speaks to personal matters, such as whether you would like to be at home, whether you would like someone to pray at your bedside, among others. • What I want my loved ones to know. Dealing with matters of forgiveness, how you wish to be remembered and final wishes regarding funeral or memorial plans. — Tennessee Department of Health

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Second of six parts that will appear this fall

A week before my (Dr. Jain) elderly parents came for a long visit, I asked them if they would be willing to have a conversation about end-of-life planning. But it wasn’t until the day before they left that we sat at the dining table with documents I had printed from the Tennessee Health Department website.

Too often among family, such end-of-life conversations do not occur. Studies show that 60 percent of people say they do not want to burden their families with difficult end-of-life decisions. More than 80 percent of people agree that it is important to have end-of-life instructions in writing. Yet less than 25 percent of people have followed through with written directions to ease the burden on their family members.

Why do we not have this crucial conversation? Talking about end of life is certainly uncomfortable. Yet, there may be an even greater fear. Talking about death may be akin to opening Pandora’s box, or being perceived as someone who is encouraging or wishing for our loved one to die.

But by having a conversation about death, we are not inviting or encouraging death for our loved ones, we are profoundly affecting how the end of life will be experienced by everyone involved — both the individual whose wishes are to be respected, and all of the family members who carry their memory forever.

I (Jain) feared that my parents might misunderstand my intentions. As we sat at the dining table, I broke the ice by talking about the death of my grandfather at 93, and how he was clear in his wishes not to go to die in a hospital. My father then told me how he spent the final day and hours with his father, sitting with him. As our conversation went on, I realized that my parents, too, had desired to have an end-of-life conversation.

Whether you are concerned about an elder family member, or preparing to share your own end-of-life wishes, there are resources and tips to make the conversation easier.

Starting the conversation

Approach the topic directly and gently. Start the conversation with plenty of time, on common ground, perhaps by discussing a shared experience. Confirm your desire for a family member’s wishes to be honored, for their dignity to be preserved.

The Tennessee Department of Health provides further guidance for this conversation in its “Five Wishes” resource. More than 18 million “Five Wishes” packets have been distributed.

A structured document called an advance-care plan, or living will, can help guide the conversation. While it is a legal document reflecting our wishes, an attorney is not required to draft it or sign it. In Tennessee, advance-care plans are available online: http://health.state.tn.us/advancedirectives/.

An advance-care plan requires three major decisions. First, an individual must name an agent. A health care agent is a person who will make health care decisions for you. You can make this effective at any time. An agent is usually a trusted friend or relative who you feel will make the best decisions on your behalf.

Next, an individual must determine how he or she defines quality of life in the final days. You decide which conditions are acceptable to you: permanent unconsciousness, such as in a coma; permanent confusion, like end-stage dementia; or dependency for activities of daily living. These are not easy decisions, and over time your opinions may change. Having a frank and thoughtful conversation about your wishes will empower your family if any of those situations arise.

Treatments and Interventions

Finally, individuals must decide which treatments and interventions they would like to take advantage of. At the end of your life, do you wish to receive CPR? Life support? Surgery? Tube feedings? Advance-care plans offer explanations and definitions of each option. If you have questions, your local doctor or nurse can help.

The final product — a two-page document — will be notarized or signed by two witnesses. Then copies should be shared with your physician, your health care agent and close relatives.

Culturally, it is hard for us to talk about and prepare for death, but taking the time to prepare now will be invaluable for you and your family later. Conversations about end of life do not need to be single, marathon affairs. Express your wishes, do your research, discuss again as circumstances change. It is never too early to agree together to a plan, but it could be too late.

Next: End-of-life conversation with your doctor

Dr. Manoj Jain is a Tennessee doctor who writes for The Washington Post. Dr. Bill Frist is a heart transplant surgeon and former U.S. Senate majority leader.